Trigeminal Neuralgia Community
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This patient support community is for discussions relating to trigeminal neuralgia.

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Welcome to the Trigeminal Neuralgia Forum<img src='/RoR/images/blank.png' class='icon_img_ww push_pin_icon'>

Welcome to the Trigeminal Neuralgia Forum! Here you will find a wonderful group of people, who have TN, suspect they may have TN or are being currently being diagnosed. We are all patients, not doctors and are here to support and share experiences and information with each other as we navigate through all the challenges TN presents to both ourselves and those in our lives.

If you are feeling overwhelmed, frightened or confused regarding any aspect of Trigeminal Neuralgia, know that you have landed in the right place.  New to forums? It’s easy and this will ALL make sense once you get here.

Communicate: To benefit the most from our forum, please post and share your questions, thoughts, concerns or funny stories. You will be surprised at how many of us will be able to relate! If you are more comfortable just reading posts, or replying, you're welcome to participate that way also. We do our best to respond as quickly as possible, but we are experiencing the same challenges in life that you do, so please be patient. You can send private messages (Send a private message (PM) by scrolling over the member’s name and clicking on “Send Message”), leave notes and read what other members have shared on their profile pages. Just remember that we are all here to learn and support each other, so please keep your words kind, respectful and helpful and of course, appropriate in content at all times.

Keep Track: Use the Pain Tracker (http://www.medhelp.org/user_trackers/gallery/pain) and consider keeping a Journal, even if you don’t consider yourself a “writer”. This can be private, public, or available only to forum friends. This is a great way to share your experiences, frustrations, history, or even track symptoms, triggers and pain levels. We think we will remember easily, but it is sometimes a challenge with medications, pain and time to complicate things. You may need this information later to share with doctors. You will be amazed at what you find when you read back your own words later. It’s a great outlet for those thoughts and feelings that brew in your head and sometimes have nowhere to go.

Tools and Pages:
You can set your visibility preferences on your profile page. Consider telling us a bit about yourself, as much as you are comfortable with. Because it’s nice to remember sometimes that our illness does not need to define us.

The Health Topics Page (http://www.medhelp.org/health_topics/list) is where you will find a vast library of information on many subjects. On the Main Forum Listing Page you will find patient forums on the left and Ask A Doctor forums on the right. MyMedhelp and Shortcuts on the top left which help simplify things.

We're glad you found us and look forward to getting to know you! Look around, explore. You will be surprised how easy it is to feel welcome, navigate and learn. Be prepared to learn and even laugh. But most of all, don’t be surprised if you make some friends along the way. After all, you deserve SOMETHING good from this TN experience. I hope you find it here. I know I have.


Feel well my friends, let me know if I can help in anyway.

Your Community Leader
Painterchic
Related Discussions
13 Comments Post a Comment
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Avatar_f_tn
I am 66 and have recently been diagnoised with TN.  My symptoms are all my teeth on left side hurt and my lips feel numb.  my left eye waters and feels blurry and I have pain in left temple.  I am on tegretal and gabapentin.  This makes me groggy but does not help the pain.  I have been through all kinds of tests: heart, sinus, dental, neck and head MRIs.
This has been going on for 6 mos.  My question is there a test that could find the cause
and if there is something I could do to relieve the constant pain in my teeth( do others
w/TN have teeth pain)?

thanks
judyth
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Avatar_f_tn
Hi judy,

Who diagnosed you with TN -- your primary care physician or a neurologist or other doctor?  How much experience do they have with TN patients?  You may want to look for a Facial Pain Specialist at a large teaching hospital -- these are doctors who deal with patients with facial pain on a daily basis.

TN is usually a diagnosis of ruling all other things out -- that's probably why you've been given so many tests.  The leading known causes of TN are:  1) blood vessel or vein compressing the nerve which can be helped by Microvascular Decompression surgery (MVD); 2) tumor; 3) MS.  Has your doctor seen any evidence of any of this on your MRI?  Did your MRI show any blood vessel compressions on the Trigeminal Nerve?  Was it a "thin-slice" (or sometimes called "Trigeminal Protocol") brain MRI?  "Thin-slice" MRIs show better detail, but there are still sometimes where the blood vessel compressions do not show up on an MRI.

The drugs given for TN pain have to be slowly incremented until you reach the level that stops the pain.  There are different drugs and you and your doctor need to figure out what the right one is that'll work for you - everyone reacts differently.

Pain in the teeth is because there are little branches of the TN nerve that go to each of your teeth.  Painterchic posted a great diagram of the face here on the site - check it out.  One coping mechanism I used when I had pain in my teeth was to rub Oragel on my teeth and gums.  It will numb the pain for about an hour.

You need to get back to your doctor and ask about the drugs, the dosage, the MRI results, how much experience he/she has with TN, and perhaps find a Facial Pain Specialist yourself or ask for a referral.

Wishing you the best,
Nancy
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485259_tn?1326312778
Great answer Nancy, thank you! Judyth, if you have been on these meds for a while and they are not working, see your doctor about trying something different. I am six months into this now and still "fine tuning" things, now adding Cymbalta to the Lyrica to 'enhance' it. We'll see. Good luck, hope you find both answers and relief soon.
J
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Avatar_f_tn
The three listed causes for Trigeminal Neuralgia are not the only causes for the condition.... Two other causes are what is known as Post Traumatic TN - in which sometime in your life you've taken a significant knock to the face that damaged the nerve - it can happen anytime in your life - mine happened at age 13 but I wasn't diagnosed with TN until I was 27.... the other cause is what's known as "Failed TN"  when a Micro Vascular Decompression or Rhyzotomy goes wrong and further damages the nerve.... sometimes you can have more than one form.... I have Post Traumatic and Failed..... due to the fact that my Neurosurgeon went too deep trying to find a vascular reason for my TN - nothing showed on several MRIs, CTs or an angiogram  and he damaged the nerve further while he was in there.  An MRI should show if your TN is from MS a tumor - which is a nerve tumor or if you have TN from a vascular reason.  I've had TN for 15 years.... and I'm only 40.  I would advise talking to your doctor about upping your Gabapentin before your tegretol and DEFINATELY find out how much experience your GP has..... that is the most important thing of all getting a doctor who has experience with TN.....   mine retired and the new doc was an absolute idiot and until I switched I was in utter agony for 7 months with nothing to help.  Even now I'm fighting my new GP and I am waiting to go back to a new Neurosurgeon for an update in my case as they think I have Anethesia Delarosa as well.
Cat from Canada
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485259_tn?1326312778
Cat,
Thanks for adding that info. I missed this earlier. I am going to take this info with me to my next appointment and share it with a friend who I think will definitely benefit from it. I'm sorry that you are more messed up afterwards. You are so right about the doctors. I think people give those two little letters "MD" too much credit. It's a package deal: experience, knowledge and empathy. And not easily found unfortunately.
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Avatar_f_tn
Hello I have been dealing with TN for almost 2 years' now. I have had 2 facial injections and was told the first time that it should last for at least 3 to 5 years'.Well my first injection was April 2009 and my second one was in Dec 2009. Now I am at the point of trying Gamma Knife Radiosurgery, I hope this works. I have been on so many meds that it's sad and nothing seems to take my pain away. I want to thank all of you for you input and experience with TN. I got alot of information from you guys and I really appreciate it.


Thanks so much,
Chanta' from B-More
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485259_tn?1326312778
Chanta, welcome. Sorry to hear your procedures didn't last as hoped. You are in Baltimore? At least you have top notch people and facilities there as a resource.
There is a blog for TN and ATN people and their families now, check it out. The admin of it is about to go to John Hopkins for the glycerol rhizotomy. There is good book and video resources there as well.
I can't put a live link on here but you can copy and paste this into your browser.
http://mytrigeminalneuralgiapain.blogspot.com/
Good luck to you,
J
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1642327_tn?1300814585
Hi, my name is Mindy.  I have both TN1 and TN2.  I was first diagnosed with bilateral TN almost 16 years ago when I was only 25.  

In December 2010 I underwent bilateral GKR.  It is hard to tell whether my complications are due to the GKR or from my meds...but has anyone else who has undergone GKR experienced things such as extreme fatigue, headaches where pins were screwed into skull, episodes that seem like anxiety attacks during sleep, a feeling as if you have a ball cap on all the time when in fact you don't or ring around your head, confusion, forgetfulness, unsteady on feet, slurred speech, and even to the extremes of hallucinations at times?  
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Avatar_m_tn
Wow,,,I also have anxiety with major heart fluttering when I try to sleep.I was diagnosed with MS three months ago followed up with TN....I am not on any meds for MS untill I have a spinal tap?My two MRI's have shown a tumer in my cervicle spine on my spinal cord,and the other MRI has shown many white masses in my brain.I have been on Neurontin 400mg 3x daily that does help a little with numbness in my hands.The tumer in my neck is terriblr,everytime I turn,flex,extend my neck,my whole body goes numb! very scary and feels bad.I have blurred vision at times,shaking in my hands and lower lip.I have difficulty walking at times and feel drunk.But the worst is the TN....this is on my left side of face from my eye down to my jaw,along with major ringing in my ear and pain in the bone behind my ear.I have headaches daily that start when I wake and go on most the day....worat with TN when it kicks in,feels like a hangover head,with nausea.I cannot explain how bad the pain is in my face,but I can tell you that it is worse than any other pain I have ever had! I had an accident 3 years ago and fx 3 ribs,pelvis and compression fx of L-4-5,also puntured lt kidney.When the MS kicks in it amplifies my leg and back pain....I am switching Neurologists because the one I had gives not a damn what I am going threw....MAJOR PAIN!!!! I am not big into narcotics,yet if they help with my pain,than why not! I am stuck with this crap for the rest of my life and do not want to feel like i do.Neuronton 400mg for three months does nothing but make me feel tired and drunk feeling.I keep trying to explain to this so called MD that I need a pain med that will help with the intense pain when it sets in.He just avoids me and walks the hell out of the room???I live in a very remote area of Michigan called Keweenaw,very tip of Mich on Lk Superior,We do not have one traffic light in the whole county,it is considered a frontier county because of the population....less than 3000 for the whole county.We have only one Neurologist here and have to travel over three hours away to see another! I am soooo damned frustrated and fell helpless.I am asking anyone who can help me with how to manage TN pain without all the nerve blocking crap that does NOTHING! Neurontin has done nothing for me and my doctor does not think pain medicine will help??cannot hurt...GIVE IT A TRY ***!! I am tired of not having a say in my own health and what would help.I am NOT a junky...I have MS and TN and I am in PAIN!...Sorrry for all the rambling I am throwing at you good folks...just frustrated thats all.  Kosk
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485259_tn?1326312778
Hi Kosk, Mindy,
Sorry to hear your situations. And I apologize for not being on here as a leader lately. All I can say at this point is that every day is trial and error, this thing comes and goes, some days are better than others, and we have to learn to tame the beast so to speak, find out what makes it worse and avoid it, find out what makes it better and do that too. Decide which drugs are worth the side effects. Find alternatives. It's a frustrating game. Especially if you have other health issues as you do Kosk and the added challenge of minimal health facilities. Be thankful for the internet and be your own advocate and learn all you can. There are many many great websites. The Facial Pain Association is an excellent place to start as it has recent articles and patient postings and a directory. Forums like this as well are great, lots of good info to go back and read through.
Non drug treatments that people use might be helpful.
I find another forum helpful for TN *************.org .
Mindy, I have never come across anyone who has described that after that procedure. There are a lot of GK's on the above site. Ask there maybe. What did the neurosurgeon say about that?? wow. sorry to hear that.
Good luck to you both.
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Avatar_n_tn
Hello, My mother went through Gamma procedure and I can admit she is anything but satisfied. She feels very alone and that NO ONE is listening to her. her neurosurgeon was supposed to follow her for 5 years and dismissed her from the practice after a short 2 years. She seems to have loss the ability to maintain attention or focus. I am writing this e-mail to you because its seems on the contrary of what popular belief is, she isnt alone. There are issues with this procedure and something needs to be done!
May i ask what your negative side effects are?
DId you try to contact anyone?
and if so, did you get anywhere?
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Avatar_f_tn
I left you a message with some info.  You may want to post your question in a separate thread to get more answers from the community.

Gamma Knife works for some patients, but not all. Unfortunately there are no guarantees with these procedures

There are good doctors out there, they're just difficult to find.

I had one GK that did not work and had to go thru 2 balloon rhizotomies to finally find relief.

So sorry to hear about your moms difficulties. Keep researching and looking for a good doctor.
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Avatar_m_tn
I am wondering how cymbalta works for you. I am taking gabapentin 600mgtwice a day and they just added 60mg of cymbalta. I am afraid from some of the things I have read about withdrawal from it, but I have been suffering from dental nerve damage to my upper right gums and no one I have seen physician wise, and I have seen many different toes of doctors, has treated for this before. I have had an MRI and cat scan and all was ok, however, i live in constant aggravation from this it is a feeling of crackling in my gum tissue where two teeth were pulled. Sorry for the rant, anyway, how does cymbalta work for you?
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